Medical cannabis gave Forzana Nasir her quality of life back. Now she advocates for the patients who have been ‘left behind’ by a lack of access on the NHS.
Health science student Forzana Nasir knows how isolating living with a chronic illness can be.
She suffers from Ehlers-Danlos syndromes (EDS) – a group of rare inherited conditions that affect connective tissues which provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
EDS can affect people in different ways. For some, the condition can be relatively mild, while for others their symptoms can leave them significantly disabled.
Forzana remembers experiencing symptoms since she was a child, but the condition really took hold in her 20s. At 27 she was left bed bound for two years, experiencing severe pain, nausea and extreme vomiting.
“I had no real quality of life,” says the 34-year-old, from South London.
“I suffered multiple symptoms including disease-related malnutrition, vomiting throughout the day, had multiple subluxations in my ribs and dislocations of my shoulder, ankles, and fingers to name just a few joints.”
She adds: “Consultants had exhausted all treatment options and I was sent home to manage with a treatment plan of 13 different medications, four times a day.”
Her GP wasn’t initially on board when she broached the idea of medical cannabis, and doctors in the NHS were clear that it wasn’t an option.
“When I went to see my NHS pain specialist, I hoped like most patients I would get access and support,” she says.
“I was told that while it is a fantastic medicine it’s not available on the NHS. Like other patients, I was offered pain medicines such as tramadol, codeine, amitriptyline, gabapentin, but they had terrible side effects that overshadowed any positive benefit they had.
“My only suitable option for controlling pain was medical cannabis at this stage.”
Like many patients, Forzana was forced to turn to the private sector. She was treated by pain specialist Dr David McDowell, a pioneer of medical cannabis in the UK, who led The Beeches private medical cannabis clinic which opened in Manchester in 2019.
Cannabis allowed Forzana to reduce her medications from thirteen to just three.
“I noticed very few side effects and it has helped with deprescribing, increased my appetite, reduced my vomiting, and is an effective chronic pain reliever,” she says.
“For acute pain from dislocations and subluxations I still take a dose of opiates, but some patients have ceased opiate use completely with the addition of medical cannabis.”
Despite having high hopes following the legalisation in 2018, EDS was not included in the conditions for which medical cannabis might be prescribed. Forzana was ‘devastated’.
“My illness was left behind,” she says.
“It ruined my hopes of having affordable treatment and being able to afford simple things like basic essentials.
“There are many patients that have been left behind, who did not gain access in 2018 and have been prevented from accessing the medicine due to the huge barrier of financial cost.”
The financial strain of funding a private prescription each month has left Forzana in the position of having to choose between her medication and basic necessities such as buying food and paying her rent.
“It is a monthly concern that can impact the effectiveness of the treatment and continuation of care,” she says.
“For some patient’s, myself included, medical cannabis is like an investment because of the cost and leaves no available option for basic things in life like food and rent.
“We are fundraising and using all our available resources to pay for an improved quality of life. It’s difficult to decide to make this investment when you’re unsure whether it would benefit your health.”
For some it is simply not sustainable. Over one million patients are thought to be self-medicating with cannabis accessed illicitly, often living in fear of prosecution.
This, combined with the debilitating symptoms of living with a chronic illness leaves patients feeling anxious and isolated, says Forzana.
“It can be an isolating experience living with chronic illness symptoms like chronic pain, coupled with the stigma surrounding cannabis it can leave some patients housebound and afraid to leave the house, because they are in fear of prosecution.”
She continues: “This is a substantial fear as there is limited protection for prescribed patients. Chronic illness can have a significant impact on mental health, particularly for some people whose symptoms are unmanaged and may be seeking a diagnosis.”
As the longest continuing prescribed patient in the UK, Forzana recently founded the patient-led advocacy service Can Do, in a bid to improve the access to medical cannabis for all patients.
“We want to help get access via the NHS which will eradicate the financial barrier of cost,” she explains.
“Although we do not promote private access, we understand it will take time for NHS access to become available and in the interim we will highlight to patients the most affordable route.
Can Do aims to gather patient’s feedback and experiences to relay back to clinicians, medical professionals, government bodies and cannabis producers to inform future developments. Frozana hopes this will help build trust between patients and those working in the sector.
“Many patients reported a breakdown and lack of trust with the medical cannabis sector, they are angry about their personal and medical treatment,” she says.
“Patients need medicine and clinicians they can trust. We want to help strengthen this connection and rebuild confidence.”
While some people have reported being afraid to speak out about their experience, their feedback is vital to help improve access to a wide range of medications and treatment options.
“Patients need a range of products and a variety of routes that the medicine can be administered, adds Forzana.
“Some are afraid of giving feedback in case it impacts their treatment, but their experience is so important in getting real change, that benefits us and happens as soon as possible.”
Follow @patientsfirstcd on Twitter and visit https://candocanna.com/ for more information
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